Nordic children with myelomeningocele

Abstract

A study was conducted on utilization of and satisfaction with the health care and medical services among 527 Scandinavian children (aged 4-18) with myelomeningocele (MMC). Data were collected from two sources: a questionnaire distributed to parents in 1984, and patients' medical records. Comparisons were made with a control group comprised of 7,792 children. Over a period of one year, 52% of the MMC group and 6% of the controls were hospitalized. Over 3 months, children with MMC had more contact with specialist care services than had the controls, while contact with primary health care was the same for both groups. Continuity of care and satisfaction with time spent with the physician were both greater among children with MMC than in the control group. Dissatisfaction with medical services was expressed by approximately 10% of the parents of both categories. Such dissatisfaction was found significantly more frequently among Danish parents and well educated mothers. Dissatisfaction with care was not related to either the child's age or the severity of its disability. Danish children with MMC received treatment relatively more frequently from primary care physicians than from specialists. In Sweden, where satisfaction was the greatest, families with children with MMC were supported by local habilitation teams.